The year 2004 marked the 40th anniversary of the historical high point in the placement of children and youth with intellectual and developmental disabilities (ID/DD) in large state institutions (state-operated places with 16 or more residents). In November 1964, in a census of all state institutions, Scheerenberger (1965) found 91,592 children and youth 21 years or younger among state institution populations (47.6% of all residents). Forty years later, on June 30, 2004, the numbers of children and youth in state institutions had decreased to an estimated 1,641 (4.1% of all state institution residents). In June 2004, a total of 16 states had no children and youth in state institutions, including 9 states that no longer operated state institutions for any individuals with ID/DD. State statistics on children and youth in state institutions in June 2004 are shown in Table 1. Trends in the state institution placements of children and youth are shown in Figure 1.
The developmental period is an important concept in public policy. It refers to the period in life from birth to adulthood during which individuals are viewed as particularly susceptible to beneficial and harmful psychological, educational, chemical, and other conditions in their environment. National and state governments have responded with a wide range of protections for children and youth, ranging from universal education to individual protections from abuse and neglect. In the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106–402, 114 STAT 1677), Congress recognized that disability occurring in the developmental period, which it defined as birth through 21 years, was particularly likely to be associated with “severe disabilities” and to cause people to be “at greater risk than the general population of abuse, neglect. . . exploitation, and the violating of their legal and human rights” (pp. 1678–1679). In the Healthy People 2010 report on national objectives on disability (Centers for Disease Control and Prevention, 2003), it is noted that, “Institutions and other forms of congregate care are inconsistent with positive public health policy and practice” (p. 181) and that, “Congregate placements for children should be ended within the decade [i.e., by 2010], if not sooner” (p. 181). Eliminating all public and private congregate facility placements of children and youth with disabilities by 2010 is a major national challenge. Eliminating state institution placements is not. It is a matter of an easily understood commitment to the basic rights of children and youth to be protected from environmental risks that are inconsistent with their developmental needs, as articulated in permanency planning policy (Johnson & Kastner, 2005; Taylor, Lakin, & Hill, 1989), with protections from known environmental risks to development associated with institutional life (Kim, Larson, & Lakin, 2001; Lerman, Apgar, & Jordan, 2005), and with national commitments articulated in legislation (P.L. 106–402), in the 1999 Supreme Court ruling in Olmstead (19 S. Ct. 2176) and in the President's New Freedom Initiative (Executive Order 13217, June 18, 2001). Slow, steady progress has been made toward eliminating state institution placements of children and youth with ID/DD. There is, however, no reason to accept such “progress” as sufficient. It is unacceptable that children and youth with ID/DD who are still in the developmental period continue to be placed in state institutions, given all the congressional, judicial, administration, and research findings that indicate the detrimental effects of doing so. Based on reports of 158 (85.9% of all) state institutions, there were an estimated 591 admissions of children and youth to state institutions in FY 2004. This is a failure of commitment to develop reasonable alternatives. In the midst of so many enormous challenges in meeting the needs of people with ID/DD, there is a manageable one: eliminate the placement of children and youth in state institutions. It can be done. One third of the states have already done it; another 15 states reported 13 or fewer children and youth in the state institutions. They could do it in the next year. Other states will be more challenged to redesign the way they respond to the needs of children and youth and to emergency and crisis service needs, allocate and provide specialized services, and so forth. It will take some planning on their part, but there are few outcomes of such significance that are so easily attainable. To not complete this task in the next 2 years should be considered an intolerable outcome to those legislators, judges, and public officials who have clearly identified doing so as in the national interest.
Authors: Lynn Breedlove, President, and Curtis Decker, Executive Director, The National Association of Protection and Advocacy Systems. Charlie Lakin, Robert Prouty and Kathryn Coucouvanis are staff members of the Research and Training Center on Community Living, University of Minnesota